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“We can chart our future clearly and wisely only when we know the path which has led to the present.” Adlai E. Stevenson

I always thought history was boring, and I must admit, If you want to put me to sleep, start reading early Australian history to me. “Convicts … first fleet … zzzzzz.”

But as Stevenson wrote, the key to the future is the past. With autism, I don’t want to see a future as checkered as its past. In this series of essays, I want to help our community see a future in which autism is recognised and appreciated for its strengths. To properly lay the groundwork, I want to look at the history of autism. This will help provide context for the current understanding of autism, which will then give a framework for understanding the autistic person, and for a glimpse into the future as new research unfolds.

The autistic spectrum has been present for as long as humans have. But to our knowledge, one of the first specific descriptions of someone who met the characteristics of the autistic spectrum was in the mid 1700’s. In 1747, Hugh Blair was brought before a local court to defend his mental capacity to contract a marriage. Blair’s younger brother successfully had the marriage annulled to gain Blair’s share of inheritance. The recorded testimony describes Blair as having the classic characteristics of autism, although the court described him at the time as lacking common sense and being afflicted with a “silent madness”.[1]

Isolated case reports appeared sporadically in medical journals. John Haslam reported a case in 1809, although with modern interpretation, the child probably had post-encephalitis brain damage rather than true autism. Henry Maudsley described a case of a 13 year old boy with Aspergers traits in 1879. There were no other reports of children with autism in the early literature, although at the turn of the 19th century, Jean Itard reported on the case of an abandoned child found roaming in the woods like a wild animal. This child, called Victor, displayed many features of autism, although he may have simply had a speech disorder. Either diagnosis was obscured by the effects of severe social isolation.[1]

Others described syndromes which shared autistic features, but without describing autism itself. The names given to each syndrome reveals how autistic features were regarded in the 19th century: Dementia Infantalis, Dementia Praecocissima, Primitive Catatonia of Idiocy.[1]

Around 1910, Eugen Bleuger was a Swiss psychiatrist who was researching schizophrenic adults (and as an aside, Bleuger was the person to first use the term ‘schizophrenia’). Bleuger used the term ‘autismus’ to refer to a particular sub group of patients with schizophrenia, from the Greek word “autos,” meaning “self”, describing a person removed from social interaction, hence, “an isolated self.”[2]

But it wasn’t until the 1940’s that the modern account of autism was articulated, when two psychiatrists in different parts of the world first documented a handful of cases. Leo Kanner documented eleven children who, while having variable presentations, all shared the same pattern of an inability to relate to people, a failure to develop speech or an abnormal use of language, strange responses to objects and events, excellent rote memory, and an obsession with repetition and sameness[3].

Kanner thought that the condition, which he labelled ‘infantile autism’, was a psychosis[1] – in the same family of disorders as schizophrenia, although separate to schizophrenia itself[2]. He also observed a cold, distant or anti-social nature of the parents relationship towards the child or the other parent. He thought this may have contributed (although he added that the traits of the condition were seen in very early development, before the parents relationship had time to make an impact)[3]. True to the influence of Freud on early 20th century psychiatry, Kanner said of the repetitive or stereotyped movements of autistic children, “These actions and the accompanying ecstatic fervor strongly indicate the presence of masturbatory orgastic gratification.”[3]

Despite the otherwise reserved, cautious discussion of possible causes of this disorder, the link with schizophrenia and “refrigerator mothers” took hold in professional and lay communities alike. In the 1960s and 70s, treatments for autism focused on medications such as LSD, electric shock, and behavioral change techniques involving pain and punishment. During the 1980s and 90s, the role of behavioral therapy and the use of highly controlled learning environments emerged as the primary treatments for many forms of autism and related conditions.[2]

Unbeknown to Kanner, at the same time as his theory of ‘infantile autism’ was published in an English-language journal, a German paediatrician called Hans Asperger published a descriptive paper of four boys in a German language journal. They all shared similar characteristics to the descriptions of Kanner’s children, but were functioning at a higher level. They shared some aggression, a high pitched voice, adult-like choice of words, clumsiness, irritated response to affection, vacant gaze, verbal oddities, prodigious ability with arithmetic and abrupt mood swings. Asperger was the first to propose that these traits were the extreme variant of male intelligence[4].

But the full impact of Asperger wasn’t felt until 1981, when British psychiatrist Lorna Wing translated Aspergers original paper into English. By this time, autism had become a disorder of its own according to the DSM-III, the gold-standard reference of psychiatric diagnosis, but it was still largely defined by the trait of profound deficit. Aspergers description of a ‘high-functioning’ form of autism resonated amongst the autism community, and a diagnosis of Aspergers Syndrome became formally recognised in the early 1990’s with the publication of the DSM-IV.

The most recent history of autism comes in two parts. The first was the revision of the DSM-IV. For the first time, rather than two separate diagnoses, Autism and Aspergers have been linked together as a spectrum and collectively known as the Autism Spectrum Disorders (although autism self-advocates prefer the term ‘conditions’ to ‘disorders’).

The second part is a highly controversial chapter that will stain the history of autism research and scientific confidence, into the next few decades. Chris Mooney, in a piece for Discover Magazine, sums it up nicely:

“The decade long vaccine-autism saga began in 1998, when British gastroenterologist Andrew Wakefield and his colleagues published evidence in The Lancet suggesting they had tracked down a shocking cause of autism. Examining the digestive tracts of 12 children with behavioral disorders, nine of them autistic, the researchers found intestinal inflammation, which they pinned on the MMR (measles, mumps, and rubella) vaccine. Wakefield had a specific theory of how the MMR shot could trigger autism: The upset intestines, he conjectured, let toxins loose in the bloodstream, which then traveled to the brain. The vaccine was, in this view, effectively a poison.”[5]

Inflamed by a post-modern distrust of science and a faded memory of what wild-type infectious diseases did to children, the findings swept through the internet and social media and lead to a fall in vaccination rates (from about 95% to below 80% at its lowest)[6].

But the wise words, “Be sure your sins will find you out”, still hold true, even in modern science. In 2010, Wakefield was found guilty of Serious Professional Misconduct by the British General Medical Council, and was struck off the register of medical practitioners in the UK. In the longest ever hearing into such allegations, the GMC considered his conduct surrounding the research project, the medical treatment of his child subjects, and his failure to disclose his various conflicts of interest to be dishonest and professionally and clinically unethical[7]. There is evidence that he also selectively chose his subjects to confound the results, misrepresented the time course of their symptoms related to the vaccinations, misrepresented their diagnosis of autism, and altered the reports of their bowel tests[8, 9].

For the record, this isn’t a comment on the science of Wakefield’s rise and fall, but the history. I am not suggesting that the proposed autism/vaccination link should be discounted solely on the basis of Wakefield’s scientific fraud. Rigorous science has already done that. The science for and against the proposed link between autism and vaccinations deserves special attention, and will be discussed in a future post. Rather, lessons need to be learned from what is one of the most destructive cons in the recent history of medicine.

The losers of this hoax are twofold. Thousands of children have unnecessarily suffered from preventable infectious disease because of a fear of vaccines that has turned out to be unfounded, and those who actually have autism miss out on actual funding because it was syphoned off into Wakefield’s pockets and into research disproving his rancid theory. As the editorial in the BMJ stated, “But perhaps as important as the scare’s effect on infectious disease is the energy, emotion, and money that have been diverted away from efforts to understand the real causes of autism and how to help children and families who live with it.”[6]

As with all good history, there are lessons for the future. Autism is still largely misunderstood. The vacuum of definitive scientific knowledge is slowly being filled, gradually empowering people with autism and the people that interact with them to truly understand and communicate. Each breakthrough and revision of the diagnosis has lead to more sophisticated and more humane ways of living with autism. But there is still a need for caution – people will use the gaps in knowledge and the pervasive distress that can come from the diagnosis, to manipulate and exploit for their own ends.

I’ll continue with the series in the next week or so, looking at the modern “epidemic” of autism.